Hi all,My father was "diagnosed" with LBD last year although we were pretty sure that he was dealing with some form of dementia for a few years before. He is 82, widowed for 5 years and currently living in an assisted living facility an hour+ away from me (he refused to move away from his hometown). His mother had the same issues in her early 70's - at that time labeled as some random medical issue and even before Alzheimer's was the name on the table. She was admitted to Napa State Hospital - a place I was never allowed to go visit as a child - she was "crazy". I am so grateful that times have changed but so hoping that this disease becomes a thing of the past by the time I get there.

He is still somewhat independent although I see that changing rapidly as we ask for more assistance for him on a daily basis. He has been in the throws of antipsychotic medications since July when he (for the 3rd time) had a 24+ hour delusion w/hallucinations that led him wandering around the facility carrying a lamp (thinking it was a child that he was saving) where he was then in "independent living".

The medication/quality of life issue is what brings me here looking for answers. I'm not sure which is worse: his frustration level at always being sedated and unable to find the joys and moments of wakeful clarity in his day or the hallucinations and paranoid thoughts that were beginning to invade his sense of safety.

I am his primary caregiver in the sense that I visit; manage his finances, medical issues and personal needs; take him out as often as possible and worry constantly.

I am in my mid-forties with twin 7-year olds. I work from home about 20 hours per week.

I am SO in awe of each of you who care for your loved one on a daily basis with never a respite. I would be a ball of jelly.

I am rewarded in all this by a greater sense of knowing my father better than I have at any point in my life and finding a mutual respect for each other that we have never before found.

Thank you for the chance to find some answers and support on your forum.

Nancy

Sat Feb 11, 2012 3:00 pm

LTCVT

Joined: Fri Jan 15, 2010 9:33 pmPosts: 3441Location: Vermont

Re: Introduction from Sacramento

Welcome Nancy. So sorry you and your dad are going through this - it's not easy for anyone. I'd like to suggest that you do as much reading on the forum and other places so you have information BEFORE you need it! There's lots of info. here and lots of support too, so I hope you come here often. All the best - been there, done that! Lynn

_________________Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.

Sat Feb 11, 2012 9:06 pm

JeanneG

Joined: Fri Dec 31, 2010 3:07 pmPosts: 1039Location: Minnesota

Re: Introduction from Sacramento

Welcome Nancy. I'm glad that you are seeing some rewards of caregiving, as well as the stresses. I hope you'll find some comfort among fellow caregivers.

_________________Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012

Sat Feb 11, 2012 11:22 pm

labeckett

Joined: Thu Apr 21, 2011 9:07 pmPosts: 248

Re: Introduction from Sacramento

Hi Nancy,

I'm caring for my parents in Davis, just down the road from you. They are still in independent living, but wait-listed for assisted living. My mother has a somewhat tentative diagnosis of LBD, possibly with some AD. She is 95 so she could well have an assortment of neuropathology, but her memory is relatively spared and her hippocampal volume relatively unimpaired compared to cortical thickness, and she does have delusions, sleep disturbance, and considerable loss of executive function. We are treating her currently with a modest dose of 5 mg aricept plus a low dose (12.5 mg am and pm) of seroquel. This combination seems to have stabilized her cognitive function to some extent and controlled the delusions; no one has been kidnapped or carjacked or fallen off the roof or had to be evacuated because the building was on fire for some time! I have also banned the 6pm news, which in Sac seems to focus most of its attention, not coincidentally, on fires, kidnappings, carjackings, and spectacular accidents. My dad is pretty much intact cognitively at 96 but more frail physically and depressed by the whole situation but unwilling to be treated for that.

I don't know where your dad is getting care, but we have had wonderful care and medical advice from the UC Davis Alzheimer's Disease Center folks. (It probably helps that I'm on the faculty and have worked closely with them for many years, so they are friends and colleagues as well as my mom's doctors.) They also were very helpful with referrals on social services and various help. Is your dad local in Sac? Does he have a good neurologist with broad experience in dementia care?

THe information here has been invaluable for me, even though I have spent many years in dementia research and have lots of colleagues to turn to for clinical referrals and advice. Hope you are able to find what you need!

Hi Nancy, Sorry for delay in my welcome, I have been away for a helping a friend with end of life issues with her mom, Anyway welcome to the LBDA forums and I hope it turns out to be a wonderful help and support system for you as you travel the Lewy Path with your Dad !

_________________Irene Selak

Mon Feb 27, 2012 1:56 pm

sferios

Joined: Mon Mar 21, 2011 11:26 pmPosts: 49Location: St Pete Beach, FL

Re: Introduction from Sacramento

I live in Grass Valley, but my father is in an ALF in Florida, so I have been traveling back and forth over the last year, with most of my time in Florida. I have a seven and eleven year old, so it is hard being away from them to help care for my father. It's a heart-breaking decision to entrust care to others, because no matter how good the facility is, they always make mistakes and you always wonder whether your loved one is getting the best care. In the end, you have both trust as well as be a 100% advocate. It's like having another child to care for.

In any case, I as wondering if there were any Sacramento-area support groups specifically for LBD caregivers. Maybe we could form one? I would love to meet with other people who's loved ones have this horrible disease. I'm not interested in general caregiver support groups or Alzheimer's support groups. This disease, as we all know here, is an entirely different animal.

Please let me know if you form a Sacto-area LBD support group. I have lots of Sacto-area members in the Northern California LBD support group that I coordinate. You are both welcome to join that email list, if that's of interest. Our group meetings are in San Mateo. A couple of times a year we have caregivers drive over from Sacto to attend.

Emanuel - I didn't know you are in Grass Valley! I know a Nevada City person whose parents (one with LBD) live in Florida. Small world.

Sun Apr 01, 2012 12:39 pm

sferios

Joined: Mon Mar 21, 2011 11:26 pmPosts: 49Location: St Pete Beach, FL

Re: Introduction from Sacramento

Robin, when is the next meeting in San Mateo? I can't keep up with an email list but I do make it to the Bay Area often enough I would love to attend meeting.

Emanuel,Several years ago I started a "meeting announcement" only email list for people that didn't want all of the emails. Shall I add you to that? If so, can you email me with your email address? Next meeting is Sunday 5/6 at 5pm.Thanks,Robinrriddle AT stanfordalumni DOT org

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